'How Can You Do This?' When the Patient's Family Dictates Care in Opposition to Medical Recommendations

Jennifer L. Lycette, MD


December 28, 2021

Some years ago, as a new attending on the inpatient service, the nurses greeted me on a Monday morning with a flurry of distress over a difficult situation.

A patient was dying of metastatic cancer. Unfortunately, this is not an uncommon situation on the oncology unit. Only, for this patient, the spouse wouldn't allow the nurses to administer any pain medications. The nurses were at a loss as to what to do to alleviate their patient's suffering — and were suffering themselves over the impediment to providing adequate care.

They told me the story: The spouse who was sitting vigil at the bedside, day and night, interrogating the nurses over anything that went into the IV, refusing to allow any opiate pain medication because, as the nurses told me, the spouse accused them of "trying to kill" the patient in doing so. Nothing could be farther from the truth.

On rounds, my clinical exam confirmed the story told by both the nurses and the data in the chart. The patient was dying of an advanced metastatic cancer. Even with no opiate mediations, the patient was so ill that they lapsed into unconsciousness. But although they couldn't communicate verbally, their body told the story of their pain: facial grimaces, furrowing of the brow, moaning, thrashing.

"Please," I asked the spouse. "Please, let us alleviate the pain."

The spouse refused.

This had never happened to me before.

I huddled with the nurses and social workers, discussed strategies with my colleagues, met with admin, and consulted ethics. Surely, as the physician, I had the power to order medication to relieve my patient's suffering. But ultimately, the response I received was that I could not order the nurses to administer any medications without the spouse's permission.

It felt…wrong. Like we were failing the patient.

Failing to do the right thing.

The humane thing.

But I was first and foremost a medical professional, and, as such, the hospital had dictated what I could and couldn't do.

I met with the spouse at least twice daily. Lengthy visits where I did abundantly more listening than talking. But I made no progress.

On one afternoon, I arrived to find another visitor, a distant family member who'd come to say their goodbyes.

No sooner had I stepped into the room, than they flew past me in anger, their faces twisted in distress. They spotted my white coat and whirled on me: "How can you do this? They're in pain. This is wrong."

Before I could frame a response, they spun away and stormed off down the hallway.

You're right, I wanted to call after them. This is wrong, and I'm sorry.

I wanted to shed my white coat in shame.

Eventually, by the end of my week on service, the spouse did allow us to administer the IV pain medication. It was clear to all of us on the team that this decision went hand in hand with the spouse finally accepting that their loved one was dying. Not from the medications we were giving, but from something none of us had any control over — the cancer.

I was relieved that we could finally address the patient's pain but horrified over the days that they had lain in our hospital, receiving nothing. I still agonize over it. It goes against everything that I believe about the practice of oncology.

This was over a decade ago.

The moment I came on service, they had become my patient. And I knew the best care I could provide would be to deliver adequate pain control at the end of life. It's what I'd spent years training to do.

But instead, for days, I did nothing.

The hospital had told me I could do nothing.

How can you do this?

It is a question that I still don't have an answer for all these years later.

As I've gained more years of experience, I'd like to think if the same situation happened today, I'd handle it differently. I'd walk into the room and take charge. I'd draw on moral authority rather than any administrative authority to administer medications to relieve the pain of a dying person under my care.

But the truth is, I don't know if it would go any differently today.

We are a society that has decided to give equal weight to the demands of the few whose decisions lead to the suffering of the many.

What does this story have to do with the current day? Possibly, nothing.

Or maybe, everything.

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About Dr Jennifer Lycette
Jennifer L. Lycette, MD, is a rural community hematologist-oncologist, mom of three, and recovering perfectionist who's writing her way back from physician burnout, one word at a time. Her essays have been published in The Intima, The New England Journal of Medicine, JAMA, JAMA Oncology, Journal of Clinical Oncology, The ASCO Post, and more. Connect with her on Twitter @JL_Lycette or her website.


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